Becoming a carer

[Alison9]

Hi

I made my first post here a few days ago. My 88 year old Mum had a stroke two months ago. I am her 56 year old daughter. I live with her and my Dad, I moved back in with them some years ago because I have my own health issues.

She is doing well especially considering her age. My sisters are very good but the main task of caring has fallen on me a) because I’m here and b) because it’s in my nature to look after people, especially Mum.

It has taken over my life and I know it’s not right but I also feel that maybe it has to, initially, just until I can get things together enough and plan. She has a lot of eye drops each day - some she does, some I do but I’m trying to figure out ways that she doesn’t get too dependent on me.

I know that I have to look after myself and I know I can’t keep up this level of care. I’m questioning myself all the time eg I help her go to bed. She brushes her teeth, I help her with her drops and she gets changed mainly on her own but I give her a hand. I think I’ve got in my head about her doing as much as possible for herself but I feel for her because she’s so tired. I worry that I’m doing too much but I’m probably not. It sounds daft writing this.

What I’m trying to say is that I feel that I may be making a rod for my own back but I don’t know how to pull back just yet. We are in a routine and Mum gets a bit anxious if I suggest someone else does her drops, for example. I am starting to ask others to do things and to think of ways to free myself up a bit. I’m just worried about her getting dependent on me but I think it’s too late for that. Maybe it’s just part of the process that we both have to go through and she’ll have to learn to get used to other people doing things as time goes on.

It does feel a bit like dealing with a child, in that sense.

Sorry, feels a bit rambly. I think I’ve just had to hit the ground running and I’m just starting to think and try to plan a bit rather than just react.

Would appreciate any thoughts.

Thanks

Alison

PS Just one more thing. I was amazed when the physiotherapist said that, in theory, there is no reason why Mum shouldn’t get back to where she was. Is that really realistic, at her age? She has made really good progress, though she is unaware of it. She’s still so tired but she is much more mobile and doing much more.

[EmeraldEyes]

Hi Alison, it’s good to hear from you again and that your mum is still doing well

At this point I will YES you are making a rod for your own back. You are being your own worst enemy and your mum won’t thank you for that if you wind up in a bed next to her. It will get easier as she continues to progress but you do need to establish a plan and routine where you have your freedom too. She is 88, your parents aren’t getting any younger, you need to prepared for the future eventualities of failing health in both. And it can’t all fall on you.

When my mum had alzheimers, we had one sister who still lived at home and she was fast become mum’s main carer. So we basically divided up the week between those of us who could come home for a couple to take over her care and give our sister regular breaks. It tended to be the weekends for me as I lived furthest away and had young children.

Maybe what you need to do is sit down together as a family and talk this out and set up a plan action together and get them to share some of the load. And now’s a good time to do it. You can easily teach your sisters how to do the eyedrops just as you had to.
If you can’t sit down together then do it over the phone and establish days and times that they can come to take over the care to give you regular breaks.

And yes you might be doing too much for your mum, and that won’t do her any favours in the long run as it may just hinder progress. Your mum has to do for herself as much as possible in order to retrain the brain. Getting a bit anxious is fine so long as you stay calm and determined, she won’t break. I’m sure she was anxious when she first came home and when you first put in her eye drops. But she soon got over all that and she will when her other daughters do things for her too. Care for your mum but martyr yourself and any anxieties she has to any changes, she will soon overcome as she settles into any new routines.

Do you ever go out, leaving your parents home alone for half an hour or anything like that? Is your dad able-bodied at all?

[SimonInEdinburgh]

Hi @Alison9

I agree everything from Emerald

Plus

Look at
https://www.stroke.org.uk/stroke/support/groups/map-local

To find Local support groups for YOU - There will be others not all groups find aligning themselves with the stroke association comfortable.

Look for local charities that offer respite breaks to carers

Talk to age UK about their services and support groups & what other arrangements in the area they are aware of

Go see your GP to ask about help for you & mum - both physical and mental well being

Talk to adult social services

Try steer the narrative with family to recognise you are in need just as much for your mental health as mum is for her physical.

Arrange for mum to go and stay with your sisters. Changing routine will be good for working out alternative ways of coping and managing with things which will add to resilience.

Start with a mindset of “this is a fun adventure that will make everything a little better for everybody and we’re going to take steps towards some goals.” It doesn’t matter how small as long as they each add to achieving it.
eg your sisters get to spend more time with their mum, Grandkids build memories while she’s here, You get some respite, Your mum (&dad?) sees more of the family, everyone has some variety…

I don’t know your relationships / situation etc but have you talked about things like “I’ve done the work I’ll inherit the house” ? Sorry if I put that bluntly.

Caio
Simon

[Mrs5K]

@Alison9 most of what i’d say has been said i’ll not repeat it but you must look after yourself too. It’s easy for us to say that though as we’re not living it daily.

Try changing things a little bit at a time. So, if your mum does her drops once a day try getting her to do it twice and slowly increase it so your mum starts doing it all the time without even noticing.

Can your dad help a bit more or does he have care needs too?

Could you leave them alone for a period of time so you can enjoy some time with friends or even just on your own.

I think I agree with the physio. If your m was pretty capable before the stroke then with effort she may well get back to or as close as back to pre stroke capabilities. That will depend on her deficits of course. It sounds like she is trying things though so evwey reason to hope.

Things will improve in time but you have to let go a bit too. Nothing wrong with helping them as needed but doing too much will have a negative impact on you all.

Best wishes

Ann

[Alison9]

Hi all

Thank you for the replies. Been a difficult few days. I suspect Mum may have nutritional deficiencies after losing weight in hospital. She’s been getting confused and down which is just not her. I’ve booked a blood test for her but it’s not for a couple of weeks. It stresses me that physios are encouraging her to do more but she is very willing and the danger is that she’ll think she’s not doing enough and that it’s her fault. I do think I’m getting better at recognizing when she is too tired though and listening to me rather than to them.

Yes, my Dad is mobile but he is very rigid in his ways of doing things. I’ve been waiting for him to adapt and get on board with doing things differently but I’m realizing that’s not going to happen - at least not now - so having to manage that too!

I’ve suggested a regular meeting with my sisters so that we can plan things and arrange some time out for me. We have all been involved in the eye drops. At the moment, she is on fourteen lots a day - various types, various bottles so it gets rather complicated. I’m working on finding the bottle types Mum can manage so she can do the majority of them herself.

So we are kind of working towards a plan. There just seem to be so many issues, at the moment so Mum can’t get a head start. She has a prolapse which involved a very stressful trip to the doctor this week. Now there’s this deficiency thing. I suspect B12 and Vit D. She has barely been out of doors the last two months but no one seems to think to check these things.

I wonder if this is a common thing post stroke? I will do a search after writing this.

Thank you for all the good and common sense advice. I sent your last reply to my sister and she was really impressed by your replies. It really does help.

[SimonInEdinburgh]

You sound as if you’re in a better place and that things are on a path to better.

The are likely to be bumps along the road yet.

Thanks for updating us - it is always good to hear the positives, it shows us all that progress is possible and you can look back when you hit a bump and recognise progress has happened & will again.

Enjoy the weekend

Simon

[Mrs5K]

@Alison9 it sounds like things are moving forward although there’s still a way to go. Good that you’ve got some bloods booked & you may find that if it picks up anything that once treatment is started that it helps improve other things too. Often things are interlinked.

14 lots of eye drops sounds a lot for anyone to manage without the added complication of a stroke.

You might have to try slowly slowly with your dad & make it look like any changes are all his idea. Sometimes people just need time to take it all in then will slowly start to adjust.

It does sound like you’ve made a bit of progress though. Well done xx

[EmeraldEyes]

Thank you for the update and its good to hear some progress is being made all round for you.

Lack of mobility means muscle wastage and your mum has lacked a lot of mobility for 2 months now. Certainly not nearly enough to maintain the muscle strength she had. And that in itself can be exhausting; its a viscous cycle.

But while you wait for the blood test and results, it would probably do no harm to try her on a nutrient shake such as Ensure or Complan to cover all the bases…they are usually high in protein and vitamin enriched which is what the brain needs and also boost her energy levels. The shakes can either be made into a drink or sprinkled into some foods and come in the usual flavours such as chocolate, strawberry, vanilla or even banana depending on brands.